A recent report from Cerebra, a national charity helping children with brain conditions, highlights the failure by all 3 governments across Wales, England and Scotland to provide good quality continence services for disabled children and their families.
What is the ‘Inaccessible, unacceptable and unaccountable’ report about?
The report (created by Cerebra alongside the University of Leeds School of Law and the Parents Alliance CIC) addresses the failure of governments in England, Wales and Scotland to provide properly resourced continence services and products (such as nappies, pads and ‘pull ups’) for disabled children and their families. As a result, many children are facing challenges every day such as social isolation, stigma and lack of self-worth. With 900,000 children in the UK living with bladder and bowel problems, more needs to be done to improve continence care services.
What were the key findings from the report?
- Impact on disabled children and families – Not having a proper service in place has caused distress, loss of dignity, interruption to school and family life, and discrimination for disabled children.
- Lack of accountability – A lack of clear guidance for health professionals and families to follow has led to a variation in what is provided.
- Discrimination – In most regions, the criteria used to determine if a child is eligible for support (and what that support looks like) goes against important principles of the Equality Act 2010.
- School impact – Children’s school experiences have been negatively impacted, causing them to feel self-conscious and ashamed because of badly designed, wrongly sized and poor-quality products they are having to use.
- Poverty – Many parents in the report referred to the financial strain of having unsuitable products resulting in having to wash or throw away clothes, bedding and other items.
What is the report asking governments to do?
- Create national guidelines (for Wales, England and Scotland) for continence services suitable for disabled children.
- A fair support system to allow disabled children to have dignity, good health and inclusion in school and society.
- Recognition of the financial burden placed on families who have to buy basic care supplies themselves when they might not be able to afford it.
What we think should happen
We believe that a failure to provide good quality continence services and products can negatively impact families that need them. Families should be supported to provide dignified and accessible continence support for disabled children to avoid worry or shame, especially at school. By creating clear guidance for both health professionals and families, the government can create a system that works better for everyone involved.
You can sign the Cerebra petition here.
Hard words/phrases
- Incontinence – Problems with controlling your bladder or bowels.
- Continence care services – Services helping people with bladder or bowel problems.
>
>
